Portal de Totana
www.portaldetotana.com
The first deputy mayor, Andres Garcia and the Councillor for Human Resources, Gertrude Maria Ruiz, attended today the opening ceremony of the Sixth National Congress on Rare Diseases to be held from today and during the weekend at the Monastery of Jeronimos , on the campus of the Catholic University "San Antonio".
Municipal representatives appointment on behalf of the municipal corporation and the Mayor of Totana, Juan José Canovas, he will on Saturday afternoon at the closing ceremony of that congress took place.
During the ceremony, also attended by Secretary General of Health, Ministry of Health, Social Services and Equality, Ruben Moreno, Chief Executive Murcia, Pedro Antonio Sanchez, who announced that the new Maternal and Child Hospital Arrixaca will have a New Unit of Medical Genetics.
Totana City Council has always been a pioneer in promoting initiatives to improve the quality of life of these patients, through close collaboration is maintained with the "D'Genes" Association, with implementation in this county.
President of the Autonomous Community indicated that this new unit will have more space, resources and staff, which "will give us greater capacity for diagnosis, treatment and research of rare diseases."
"It's a step in the assistance provided to rare diseases in the region, which has become in recent years a benchmark in this area," he remarked the president, who praised the efforts of "those who have boosted the partnerships for the dissemination of this reality, who brindáis support to patients and time, are able to spur the government to get involved. "
In Murcia there are more than 85,000 people suffering from some rare disease, "they and their families are a priority for the Government of Murcia," remarked the president, who alluded to some of the developments and steps have already in this regard in the region.
Advances in the care of rare diseases
During the opening of the Eighth National Congress of Rare Diseases, the president reviewed some advances that have occurred in the region in terms of diagnosis, treatment and research in this area.
In this regard, he recalled that the first act of the legislature was a meeting with the Spanish Federation for Rare Diseases (ERDF) to lay the foundations for the future Plan of Comprehensive Care for Rare Diseases, which includes actions in the education and health sector.
Also, the regional government approved in September a decree to establish the criteria for management and operation of the Information System on Rare Diseases in the Region of Murcia (SIER-RM), operational since 2009 and is encompassed in the Spanish Network Rare Disease Registries Health Institute Carlos III, "for expanding sources of information is a key to understanding the situation, plan resources and clinical research possible step".
New specific line in Biomedical Research Plan
The new Biomedical Research Plan of the Region will include a priority line for rare diseases. "More equity for research and new ways of raising funds to advance the fight against any of these diseases"
The Region has centers of reference in this area, and referred to the Center for Clinical Biochemistry and Genetics, "which is at the forefront of genetic diagnosis," or the Section of Medical Genetics and Dysmorphology University Hospital Virgen de la Arrixaca , "which is what in diagnosis, treatment and research."
The authorities have highlighted the efforts of patient organizations to promote, for example, the creation of day center for Cystic Fibrosis patients in El Palmar or the Multidisciplinary Centre 'Celia Carrion Perez de Tudela' Association "D'Genes ".
Source: Ayuntamiento de Totana
Privacy policy
- Legal notice
- Cookies